Wednesday, June 26, 2013

(Today we have our first post from Meredith MacMartin (@GraniteDoc), a palliative care doctor in New Hamsphire, who referenced this video game in a Tweetchat several weeks back. I'm pleased to welcome her to Pallimed and I know you will enjoy this thought provoking post. ~ Sinclair)My
brother-in-law Dennis is seriously into video games. He’s a designer
and programmer who has worked with NASA on using video game technology
for training and community outreach purposes, and who is passionate
about expanding the use of gaming for entertainment and especially
education. I’ve had many conversations with him about this, but always
came away thinking something along the lines of “My work is with people,
and you can’t translate interpersonal dynamics into a game”.I just
couldn’t see how gaming could have any application in the palliative
care world, which grapples not only with strong emotions but also with
high-level decision making that is deeply personal and specific to each
patient, family, and illness. How could a video game create anything
like my daily work experience?

“...
an adventure game that acts as a living painting; a poem; an
interactive retelling of Ryan and Amy Green’s experience raising their
son Joel, a 4-year-old currently fighting his third year of terminal
cancer. Players relive memories, share heartache, and discover the
overwhelming hope that can be found in the face of death.”

“And
wow, you really got every detail right! I can’t believe it! There’s the
armchair. And it is! It is always too small! And rubbery. Here’s the
phone right next to it, of course. The bed is over there. The bathroom
is a room attached to this one, and then there’s another sink counter
way over here, where you religiously wash and sanitize your hands.
There’s the salmon-pink, kidney-shaped basin sitting on the counter just
to the sink’s left: maybe it’s supposed to be a bedpan, but we always
used it for vomit instead. Everything is just right, just the way I
remember it.

And
then there are those great big windows – there are always those great
big windows – and if it weren’t for those big picture windows, you’d
never know the time of day, since the ICU is always so dark. That moment
really struck me, seeing out those windows and realizing it’s still
daylight.”

This
could be my ICU, where I have spent many hours (daylight and otherwise)
in front of those plate glass windows, both as a resident making
frantic adjustments to drips and vent settings, and as a palliator
working to be the only non-frantic entity in the room. Her description
of the physical setting makes me catch my breath: what else did the game
designers capture? Jenn Frank, the reviewer of the game, goes on:

“The
very first time, my mother was supposed to die. She was supposed to
die, and we succeeded instead. She survived several times after. For
just under a year I was needlessly cavalier. I do remember what it felt
like to be the hero. I also remember what it felt like to get so, so
tired, which was a long time after I’d stopped being afraid.”

This
stops me in my tracks. What she describes is likely immediately
familiar to all of us working in this field: the false hope of
“success”, the fatigue, the fear. The creator Ryan Green (@RyanGreen8) describes the game as
primarily about hope, something that seems so slippery to me in the ICU.
I start thinking about the audience for this game. It has always seemed
to me that the caregiver experience in the ICU must be excruciating
regardless of the outcome; who would want to relive that? But then it
occurs to me that perhaps the real value of That Dragon, Cancer
is not for those who have survived the dragon, but those who have yet
to face it. Or those who have just learned of the existence of the
dragon in their own life. If you could prepare yourself for the hardest
thing you will ever go through, if you could practice it by experiencing
a fraction of it ahead of time, would you want to? Would it help?

***

A
few weeks ago, I sat in the conference room of our ICU, across from a
family whose mother was dying in the room next door. They were weighing
whether to continue aggressive treatment or to withdraw life support and
allow a natural death. The patient’s daughter and DPOA said tearfully
“I think I know what my mother would want, but I’ve never had to make
this kind of decision before. It’s not like you get to practice these
things.”In that moment, I couldn’t help but think of the video game, of
the artificial ICU in the game and the emotions it was able to evoke in
one who had experienced the real thing. And I couldn’t help but think,
what if this family had
practiced this hardest thing before? Would it have helped? I don’t know
the answer, but it has shown me that perhaps interpersonal dynamics are
more translatable to a virtual reality than I had supposed. What other
digital tools might be out there waiting for us?

Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.Previously published on cases.pallimed.org

Case: During a weekly Palliative Care Consult meeting, it was discussed that if S, a 57-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, S was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. S told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.

After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of S’s death triggered a process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. S was sent home with a ventricular assist device (VAD) long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours S was back in for her heart transplant.

Surgery went very well, and S was out of the ICU with few complications. Yet, once S was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.

Discussion: This was a process that was not resolved as in our modern media. The resolution was assisted by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, her family members who realized her mortality and took ownership of her suffering and their contribution to the dysfunction in their household.

In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as smiling demonstrating 'No Pain' to 10 being 'Unbearable/Excruciating Pain'. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, whatever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”

While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.

There must always be a clear line between the clinical team treating the patient and the team with the skills and ability to harvest organs from a deceased patient. That has been a long held standard of transplant ethics and is reinforced in the story by a bio-ethicist, Dr. Stuart Youngner. In the audio version of the story (not the print version) Dr. Youngner also mention that in one hospital he works with the organ transplant team tries "to be introduced to families early, not as organ procurement organizations but as end-of-life care specialists."

Hello! Alarm bells?! Palliative care teams need to be very aware of this potential and need to talk to OPOs and their transplant teams about this potential blurring. We need to have cooperation and discussion to make sure we are collaborating but again a firewall is needed to protect the patients currently under our care. I think there are several ways hospice and palliative care can work with OPOs. National Healthcare Decisions Day and advance directives for starters? Interestingly I could not find anything more than this NPR story about the UNOS meeting today and tomorrow. There is an open session and I for one would be very interested in the outcomes.

If you have experiences as a palliative care professional (hospice or hospital) with OPOs, please share them in the comments below.

Coda
After listening to the article I also have two tips for any journalists covering stories like this:
1. Avoid phrases like 'increasingly popular' when describing organ transplant methods. This isn't a homecoming contest.
2. Do not say 'discontinue care.' Care is never stopped. We always keep caring. Technology and treatments can be stopped, but never caring.

Monday, June 24, 2013
by Christian Sinclair ·

Thursday, June 20, 2013

This month, the Cochrane Collaboration has released a review of home palliative services for adults with advanced illness and their caregivers. The authors, led by Barbara Gomes, MSc, PhD, set the primary outcome as occurrence of death at home. Secondary outcomes included the time the patient spent at home, satisfaction with care, management and degree of pain and other symptoms, symptom burden, physical function, quality of life and caregiver pre and post bereavement outcomes. Economic data was also examined and included hospital costs, other institutional care costs, community care costs, informal care costs, and equipment and medications prescribed.

Friday, June 14, 2013

(Editor's note: Each year we will update this page with newer articles that come out highlighting the relationship between Father's day, remembrance and grief. - CTS)

by Christian Sinclair

I drove from Kansas City to Oklahoma to bury my father in a Veteran's Cemetery two years ago this summer, not long after Father's Day. I have not really thought much about that day in the following two years. Which now feels kind of strange. Shouldn't I be think about it like a normal grieving adult child?

It occurs to me now as I anticipate my wife and kids to celebrate my tenure as a father, that days like these are also memorial days for so many people. Although I have talked with many people who have also lost one or both of their parents, it never really occurred to me as it is this week, the profound impact of what it means to 'celebrate' Father's Day without your father.

Tuesday, June 11, 2013

This summer you may meet many superheroes at your local cinema. A frequent story telling device in the superhero genre is the origin story. By showing how a superhero emerged from humble beginnings and transformed into a powerful force for good, one can give meaning to context and motivations and lead to a better understanding of who that person is. In meeting many hospice and palliative care professionals over my career I have always enjoyed hearing how they discovered the field. For some it is a startling negative exposure to uncontrolled symptoms or hope-crushing poor communication, and that has driven them to make a difference in the world. For others a wise mentor may have guided them during their professional development to become a great clinician.

(A note on this series: We are using Soundcloud to host the audio files for Pallimed Origins (click here if you cannot find the embedded audio above). The audio files can be downloaded for offline listening as well. We already have a few interviews in the can, but I am always looking for more interesting stories, so if you know anyone please make sure to contact editor@pallimed.org, and we will get them on the list. Any discipline, any background are welcome. Interviews can be done in person, by phone or internet.)

Tuesday, June 11, 2013
by Christian Sinclair ·

Saturday, June 8, 2013

Back in March, the contributors of Pallimed got together for a hard conversation. We were only missing a few people but it was still a sizable gathering at a restaurant late one evening in New Orleans. We have met at Academy meetings before, really to check in with each other and how all of us were doing in our professional and personal lives. But this was a little different. None of us were posting with much regularity for the previous 18 months. Compared to where we were in 2008, 2009, and 2010 we all recognized we had many more responsibilities and working on Pallimed really didn't always fit into our schedule despite the best of our intentions.

But there was a different spark that night, different from years past. This spark was probably brighter because of the darkness from being dormant for much of 2011 and 2012. We challenged each other to not let this great opportunity to fall by the wayside. With the knowledge and wisdom from our schooling and clinical experiences, we recognize there is also a responsibility to share information, to engage in a conversation which can change the world before any one person becomes our patient. Pallimed is a strong platform for sharing and we realized we did not want to just keep it to ourselves, so we are now reaching out to many new voices, including yours.

Do you want your patients to have doctors and nurses who understand good symptom control?
Do you want your community to think differently about how they approach end of life?
Do you have conversations about pain medicine portrayal on TV and film?
Do you wish your parents understood what you do for a living?

...then write with us, share with us, talk with us.

See your wishes for the world and the pain you want to relieve through this platform and together we can make a tremendous difference. This site is not about one person alone late at night writing on the website. It is about ten, one hundred, one thousand people alone late at night writing on the website joining in a cacophonous conversation that spreads across the globe to support the good work you do. Supporting Pallimed and other hospice and palliative blogs is about investing in yourself.

CASE: Mr. K was a 41 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. K had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.

Once Mr. K became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 7 year-old son and 9 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. K with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. K in applying these materials to the conversation he would have with his children.

First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. K to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. K identifying words and concepts about illness and death that his children would understand. Mr. K decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”

Although his message was brief, Mr. K feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. K practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.

The practice helped, but Mr. K still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. K might reassure his children that he’s still going to help them with their homework and read to them every night.

DISCUSSION:
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.

3. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider, L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.

Friday, June 7, 2013
by Christian Sinclair ·

Wednesday, June 5, 2013

You know the kind of day when family meetings are not going
well.Which is exactly how you feel when
the first thing after introducing yourself a grandson asks: “why aren’t there
any lawyers present at this meeting?”

One of those days you are trying to help someone who is
seriously ill and dying.Sometimes it is
emotionally harder because they might be closer to your age, reminding you that
cancer or tragedies have no mercy.Additionally, when you are helping others
while you are also trying to care for a friend or a loved one who is seriously ill
can be overwhelming.

To be honest, the fear of being emotionally drained made me
hesitate before deciding that pursuing a career in palliative medicine was
right for me.

I once heard the palliative care pioneer David Weissman say
“I have a limit on the number of difficult family meetings I can handle in a
day, and that number is four”.No matter
how seasoned you are, difficult cases will take a toll on you.Being early in your professional career
certainly puts you at a higher risk for burn out. More than once we have made changes to the
clinical rotation situation of learners in a personal crisis to allow for some
rest, recharging and refocusing.

So why do we do this
palliative care work?

Palliative care work can be rewarding when you are able to
work as a team to help patients and family at a critical time in their
life.

So as palliative care
needs grow how do we take care of ourselves to continue doing the work we do?

An Important strategy for self -care is to attain a balance
in both professional and personal dimensions. The wellness wheel 2
recognizes the following dimensions: physical, intellectual, emotional,
spiritual, social and occupational. See figure 1 for a schematic representation
of a person achieving balance in their life.

On the other hand see figure 2 depicting an out of balance
wheel.

This wellness wheel is that of a person who is obsessed with
the occupational dimension of wellness. He/she is engaging in the occupational
activity to an extent that there is little time to attend to elements in the
other wellness dimensions.

Tips on self-care

Personal: prioritizing close relationships with family and
friends,maintaining a healthy lifestyle
(e.g. balanced diet, adequate sleep and exercise), making time to rest (vacations!),
and pursue hobbies.

For more strategies on self-care see the video companion to
the article here.

“We all struggle on how to care for ourselves when we are
engaged in our family life and are engaged in our professional lives”Jane de Lima Thomas

“Get started today on
doing something you can implement to take care of yourself!” VJ Periyakoil

Part 2. Palliative
care Prevents Burnout

Interestingly in the same issue of the supportive oncology
journal there is an article by
Mougalian and collaborators looking at factors associated with burnout
among oncology fellows. Oncology fellows
across the United states completed surveys that evaluated the level of burnout .The
prevalence of burnout was high; with over half of the oncology fellows reporting
burnout in at least one of the 3 areas.Fellows who reported receiving good quality palliative care education (Teaching
on opioid management, hospice criteria, and goals of care discussions) were
associated with less burnout.

Pallimed: A Hospice & Palliative Medicine Blog Founded June 8, 2005.
This blog is a labor of love whose only mission is educational. Its content is strictly the work of its authors and has no affiliation with or support from any organization or institution, including the authors' employers. All opinions expressed on this blog are solely those of its authors.
In addition, all opinions expressed on this blog are probably wrong, and should never be taken as medical advice in any form.